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Might have a brain tumor. Should I get a second opinion?

Posted by Karl @Karl, Oct 17, 2015

Hello. Well....I am 52 and found out yesterday that i have something going on in my brain.... The neurosurgeon wasn't sure, but thought it looked like a Glioma from the MRI. He recommends an open biopsy ASAP to confirm and to allow him to visualize the area. Right now i am in the absorbing stage and looking for suggestions on whether to proceed with him, or immediately assume the worst and escalate to requesting an appointment at Mayo Clinic.

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Jackiewizardof | @Jackiewizardof | Nov 11, 2015
In reply to @colleenyoung "Well, I aim to change that here on Connect. Having being diagnosed as a child and..." + (show)
@colleenyoung

Well, I aim to change that here on Connect. Having being diagnosed as a child and now 24, do you get treated in a pediatric facility or adult facility? Young adults often fall between the cracks don't they?

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No I'm seen by an adult practiced doctor. We sure do fall between the cracks

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Jackiewizardof | @Jackiewizardof | Nov 11, 2015

No, my shunt is used for the sists that fill up with CFS fluid and drain into my stomach. The ommyaresawar just holds the fluid and has to b drained by a needle.

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Jackiewizardof | @Jackiewizardof | Nov 13, 2015

I was just wondering if anyone has experienced a feeling of their head shaking? I sit in my chair and try to relax but it feels as if my head is shaking in some way

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audrapopp | @audrapopp | Mar 23, 2016
In reply to @Jackiewizardof "My name is Jackie, I am 24 years old and I am a brain tumor survivor..." + (show)
@Jackiewizardof

My name is Jackie, I am 24 years old and I am a brain tumor survivor of 20 years. I have a Glioma type of tumor. I've had radiation, chemo therapy, and five brain surgeries. I now have one brain shunt and an ommyaresawar. I still have the tumor, the doctors r not able to remove all of it. The tumor has taken some of my eye sight, my energy, and ability to do some things on my own. I suffer from chronic fatigue. I have joined this site because I hoped to find someone who shares my experiences and someone who knows what I'm talking about and would like to share some of their experiences with me.

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Hey Jackie~
Although I'm not "exactly" like you....no two brain tumor patients really are, I do have some similarities. I am a 16 year survivor of a very rare brain tumor called an Ansplastic PXA. I have also had 5 surgeries, 3 different chemotherapies, standard radiation and most recently proton beam radiation too. I was not a child through all of this but experience the fatigue and some long term side effects of treatments. The best advice I can give is to really stay as active as you can despite the side effects...even if that means just doing a short activity each day. I learned at Mayo Clinic that simply practicing daily meditation or doing yoga can improve fatigue. Keep making plans and having things to look forward too! Most importantly...be good to yourself!! It's ok to feel bad about what has happened to you sometimes, but just don't allow yourself to get stuck there! If you have the opportunity to join a local brain tumor support group I would highly suggest it. You are not alone!!!

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Markelia | @markelia | Sep 10, 2016
In reply to @cynaburst "Hi Jackie -Welcome. I am also a brain tumor survivor, though I do not have a..." + (show)
@cynaburst

Hi Jackie -Welcome. I am also a brain tumor survivor, though I do not have a glioma. However, I do have a VP shunt. Is that the same kind of shunt you have? Mine is for hydrocephalus caused by my tumor, which was actually an acoustic neuroma.

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Hi! my daughter's hydrocephalus was also caused by her tumor. Instead of a shunt, surgeon put in a catheter. Where was/is your tumor?

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Cynaburst, Alumna Mentor | @cynaburst | Sep 10, 2016
In reply to @cynaburst "Hi Jackie -Welcome. I am also a brain tumor survivor, though I do not have a..." + (show)
@cynaburst

Hi Jackie -Welcome. I am also a brain tumor survivor, though I do not have a glioma. However, I do have a VP shunt. Is that the same kind of shunt you have? Mine is for hydrocephalus caused by my tumor, which was actually an acoustic neuroma.

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Mine was an acoustic neuroma. It was in the CP angle next to the brain stem.

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1000016352 | @1000016352 | Jul 6, 2017

Hi,
From my humble experiences in medical field, I am not sure if all the cases need similar treatments, but many complications and negative expectations can be resulted from the psychological and the medical (physical) effects of the disease process and the conducted procedures on the person's body parts. Also I am not sure about what people tell and that is there is a hospital in China get the patient to the final stages of curable treatment. The number of the hospital as they mentioned and I am not sure if is correct, you can check with your doctor.00862034471288. Wish you ladies getting well soon!

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